It's really hard to function today without the inevitable breathing in my face like an invisible fire breathing dragon. Sissy comes home tomorrow. Today is my last day of peace.
Here's a plus: Wii Fit says I'm only 34. Huzzah. I feel like I'm 64.
The therapist said "well, it's best to be positive. Perhaps Sissy will surprise you with what she has learned here."
So we asked Sissy what she learned. She hasn't learned a dang thing. We tried role playing. She blanked. "what? huh? what was the question?"
She told the therapist that "the staff was lying on her" about her sleeping behaviors. Right. Because a team of psychiatric staff is going to gang up on an 11 year old and lie in her charts about what she's doing.
When we asked the therapist about the fact that Sissy has continued to verbally state that she feels safe there, that she feels she'll return to her behaviors at home, the therapist said, "Unfortunately, statements aren't considered. Only behaviors. And her behaviors do not show that she is a threat." Isn't that a curious thing? Homeland Security will land your ass in jail if you are angry at a guy for banging up your car in the parking lot of the grocery store because you were verbally threatening someone and could therefore be conceived as a physical threat. But if a PSYCHIATRIC patient makes statements of intent while IN PSYCHIATRIC HOSPITALIZATION, those statements are ignored and not considered as applicable when considering behavioral risks.
When we told the therapist that we were concerned for our safety, she said, "I can hear your concern. Unfortunately I hear many stories like yours." Then she asked again if we would consider relinquishing custody.
I explained that in our state, that is VERY bad for the rest of the family. It is considered abandonment, we are investigated for child abuse, the other two go to foster care ... *trying not to cry*
We told the therapist we are getting a lawyer, that it's about protecting the four of us at this point. She said she understood but beseeched us to be positive about any progress Sissy may have made, to at least give her a chance to prove herself. We told her that past history has proven otherwise.
The therapist asked about an appeal to medicaid. We explained that the family therapist from the hospital had every intention of doing so but since she has been out on medical leave, we feel like the ball has been dropped in our daughter's case. The Dad reiterated that if an appeal could have been made but was not and Sissy harms herself or someone else, that a lawyer would be notified of the negligence.
Having talked to the new IFI supervisor the day before, she shares our concerns, that we'll be calling 911 on Sissy before the IFI team has a chance to do their intake on Wednesday morning.
Here's the scoop for others reading this story and wondering how to dodge the same path:
1. APS medical review boards, such as we have in our state, are in charge of deciding how state medicaid dollars are spent. Ultimately, it comes down to the dollar. [1] Is your child ultimately going to cost less in a facility or at home with community services? That's easy. On paper, it's at home, regardless of what the medical documentation says. APS covers their butts by reciting criterion for placement.
2. criterion for placement:
a. behaviors that have occurred within the last 30 days only.
b. behaviors, not statements or verbal threats
c. actively suicidal
d. actively self harming
e. actively threatening harm to others
3. Sweeping changes in mental health
the states are being bankrupted by medicaid, disability and social security. In most states, the average is 10% of the population suffers from mental health or developmental delays (or in my children's cases, both). But that 10% is costing hundreds of thousands of tax payers dollars. If you live in one of the poorer states in the nation or if the politicians in your state have misappropriated funds either through ear-marked legislation or poor budgeting, then you have a budgetary recipe for disaster.
ERGO: states are making prettily worded changes to mental health so they can justify closing state mental hospitals. Legislation is being passed right under our noses that says children under the age of 13 are best suited in a home environment regardless of their condition. Initiatives are being created to prove the point. In our state a 2011 initiative was to keep ALL children at home and that RTCs would be nothing more than short term/acute care facilities. There are no more long term state funded hospitals. In fact, our state is actively closing the facilities for adults as well. The legislators all say that it is based on research, that DBHDD patients are best served in their local communities. Except that most local communities do not have the services. And worse yet, the pay in those jobs is so piss-poor that they can only hire moderately adequate therapists who for the most part, have no friggin' clue.
4. relinquishment
It's a joke to think relinquishment provides a child with appropriate services. In our state, Sissy will just be put in foster care, which may or may not be a therapeutically trained place and put up for adoption (in the meantime we may or may not be liable to pay the state back for that foster placement). Along with the 2011 initiative, our state made group homes only available for ages 13 and older, with most of that population represented by juveniles with criminal histories. In other words, STILL not an appropriate placement for Sissy. Again, as with foster placement, we may be liable to pay for group home even after relinquishment. bottom line: that doesn't get Sissy the care she needs. In fact, it sets her up to age out of the system with no support, no advocates, no family. She'll go to drugs, alcohol and sex. Given: she may do that anyway while in our care, but the percentage of that happening is marginally lower.
5. Private vs. State facilities
If your state runs an APS medical review board to manage medicaid dollars, it requires a civil action lawsuit for the state to do a case-by-case consideration of using state dollars to pay for an out-of-state placement in a PRTF licensed facility. The hurdle is proving that an out of state placement will provide better care than the in-state hospitals while the state of your residency argues in court that it is a lateral move, that there is nothing more to be provided that your state hasn't already done. And if you've refused local community resources in any capacity, the henchmen will have your head.
Private facilities are not PRTF licensed. Here's where the rubber meets the road. Several months ago I called more than 40 national facilities trying to find a placement for Sissy. In a cold call with admissions with all but one, I was told that Sissy is too severe for their programs. Meanwhile, the state continued to tell me she wasn't severe enough for a PRTF. I didn't understand the hang up.
The one private facility I called I managed to talk to someone that was kind enough to be honest. He said that state facilities will NEVER provide adequate services for children like Sissy but private facilities will never be billable through medicaid because they are not PRTF licensed. Bottom line, he said? Pay out of pocket. And if you're broke, well, that's really sad. And if you've already spent your life savings on your child and are broke, even sadder. He said, "get a lawyer."
6. What's a PRTF?
PRTF facilities provide 24/7 nursing, psychological and psychiatric services. Private facilities do not have that kind of staff on site. Most have a medical team that is "on call" and the staff are trained to dose medications. In private facilities, children requiring more strict medical care are scheduled appointments and bussed to those appointments. The staff managing their unit then follow through with doctor orders. this is why medicaid won't pay for them. Medicaid, and in particular, APS review boards, do not acknowledge these facilities as "medical facilities" and therefore they are out of the requirement to pay.
7. In our state, having talked to a woman from kidlink dot net, we are in a particular damning situation. As soon as I said our state, she sighed and said, "oh dear. there isn't much I can do for you. I'm sorry." Unlike other states that are more willing to be supportive, our state, ranked 8th in the nation as the poorest and is in the top ten for the percentage of the state population that suffers from MH, DD, or SA only has two major metropolitan areas of tax payer dollars to support the entire state population. As a mostly rural state with an unusually high tax burden of disabled, indigent persons and a regrettably small budget, there is little that can be offered. The DBHDD region we live in is the largest but is second to last in state budget allocation of funding for services. What's worse, when DBHDD began restructuring under the "new initiatives" in 2007, many of our resources were sent to the metropolitan areas of the state, both of which are three hour drives from here. In other words, what I've been screaming for the last four years is spot on truth. There are no other resources available to us that will benefit Sissy.
8. Move?
Moving is another can of worms. First, let's start with the fact that I have a SECOND impaired child that is thriving in this community. Moving would uproot him and put him in crisis. Second, The Dad's business is a local business. All of our clientele is here. Moving requires us to sell the business (in a flagging economy) and restart somewhere else. It has taken many years to build the clientele we have and beyond the SSDI we get for AB and Sissy, it is our sole source of income. Third, we could move
to a state that has written laws the protect us from being forced to
relinquish custody of our special needs child. But it takes months to get on the state medicaid program, find physicians, etc. I can't pay for the thousands of dollars of medications Sissy and AB take every month. Six months of waiting to get back "on the system" would be unbearable.
9. Private adoption
Oh, now there's a kitschy idea. On my own, try to find a family to adopt Sissy. Hrm. Without naming names, I have friendships with several women that have done this, or tried. If you think our story is harrowing, you haven't heard ANYTHING.
How can there be such a disparity between therapeutic and psychological opinions, state budgets, private facilities and the grappling of parents to provide adequate support for their children while protecting themselves and their other children? How do we prevent double jeopardy (abandonment charge if we relinquish custody, failure to protect charge if she hurts AB or WG)? How do we live a functional life with a child that will never be functional? How do we get restitution for doing a "good deed" by adopting a challenged child only to discover that we're on our own and that WE face criminal liabilities, not the birth parents that harmed her to begin with? How do we create a future for Sissy that doesn't repeat the pattern over and over with unwanted pregnancies of more challenged children that are abused in her care? How do we educate the public without becoming cynical? How do we overcome the incredible loss of relationships with people that don't understand what is happening to our family and to our daughter? How do we find therapists that are actually more knowledgeable than we are? IS there such a thing?!?! How do we still have faith in a higher deity that seems to ignore our pleas for help? How do we ask church for help when they don't understand mental illness, when clergy aren't even properly educated about it?
All I wanted for Sissy was a better future than her birthmother has.
All I wanted for The Dad and I was a functional family.
All I wanted for me was love and happiness.
All I've gotten is pain.
31 hours and Sissy will be through my front door and I have nothing more for her than I had when she happily and gaily left here 97 days ago.
[1]in an effort to understand the many nuances of various mental health, substance abuse and developmental delay diseases, i watch many documentaries, reality and talk-show programs on these topics. Most recently, in a Hoarders episode, the narrator pointed out that in 15 years, it has cost tax payers upwards of $500,000 dollars to support just ONE hoarder. The program lists that there are more than 3 million hoarders. Yes, mental illness is an enormous tax burden. Yes, I acknowledge that Sissy is one too. But how much more of a burden will she be if she doesn't get appropriate care NOW, when it matters, so we prevent her from having criminal offenses, drug and alcohol addictions, STDs requiring medical intervention and offspring with equally damning mental health and developmental delays?!?!? I say the bottom line is the dollars spent TODAY save tax payers hundreds of thousands of dollars LATER. APS doesn't agree. They're looking at what is currently in the state budget, not what they'll have to pay later. Perhaps, they counting on the fact that a child that is suicidal at age 9 is more likely to die prematurely of a self-inflicted injury, overdose, criminal or domestic violence or any of the many other preventable premature deaths if a person lives a safe, healthy lifestyle?
